As you may have noticed, I haven’t posted in a while. Mostly I’ve just been busy—working, teaching, writing my dissertation, and trying to having something of a social life. Basically I’ve been playing at being a normal person. And I did a pretty good job at it, too. This weekend though, all the small complaints that I had been collecting over the past few weeks (feet too sore to wear heels, intense morning stiffness, knee pain, fatigue, photosensitivity, GI issues) seemed to snowball together, and now I’m lying on the couch feeling sorry for myself. I like to think I’m getting better at not blaming myself and riding the wave of flare and remission, but it’s still really hard. Sometimes I feel like as soon as I get everything under control and establish a routine, something new pops up to wipe me out again.
Between the Arava and inflammation I’ve lost more than 10 pounds since August, despite still being on a low-moderate dose of prednisone. While for many people that would be a victory, for me it isn’t—I’m already at the low end of normal BMI. The GI symptoms I’ve had recently, which may or may not be from the Arava, have not helped either. I’ve been tracking my stress levels and watching the foods I eat, cutting out wheat and dairy, but it just seems to be totally random and unpredictable. I’d like to exercise too, but I don’t have the energy (yes, that old chestnut). And it’s hard for me to take the compliment when people tell me how good I look, since I feel so unwell and unfit inside. I suppose I should be pleased that my make-up skills are good enough that I don’t look like death warmed over.
All this makes it sound terrible to be me, but that isn’t really the case. I’m just frustrated with my body. I really am grateful and content most of the time. I have lots of love in my life and people who are looking out for me; I have a job that I find satisfying and fulfilling; I have my academic work—which I love, even if academia makes me a little crazy sometimes; I’m financially stable and I have decent health insurance, though I often have to fight to get what I need; and I have various volunteer and social commitments that keep me engaged in my community when I’m able. It’s a good life, even if it’s not the one I thought I was going to have.
In the academic discipline of Disability Studies, one of the topics in discussions of disability narratives and the social construction is disability and the so-called “super-crip narrative” or super-crip stereotype. The super-crip narrative follows a familiar pattern of documenting the experience of the individual who achieves great things in spite of a disabling condition. Usually great emphasis is placed on their “positive outlook” or optimism and sold to the public as a “feel good” story. See, for example, much of the recent coverage of Olympic sprinter Oscar Pistorius, known for his high tech carbon fiber prosthetic legs and childhood amputations as much as his running times. Other examples include historical figures like Helen Keller and FDR, or, more recently, Christopher Reeve.
One of the primary critiques of the super-crip narrative is that it emphasizes the idea that people with disabilities should be smiling, good-natured, and docile about their experiences (aka “The Good Cripple”), even when those experiences are painful, frustrating, and the source of a great deal of unhappiness. These stories tend to reinforce the expectation that people with disabilities should be grateful for any assistance they receive, no matter how limited or patronizing. They also put undue pressure on people with disabilities to “overcome” their disability— as though living with a disability weren’t difficult enough!— or, as in the case of a condition like autism, they suggest that disability is always paired with an extraordinary skill or talent. The Supercrip Narrative can also stand in the way of accommodations for people with disabilities, implying that “overcoming” is a matter of will and that accommodations are unnecessary, or that one should be nothing but grateful for any accommodation, no matter how small. Basically, the super-crip narrative says, “if you can’t overcome your disability, you’re not trying hard enough.”
While I am opposed to the sort of patronizing narrative designed to be an inspirational story that makes able-bodied people feel better about themselves, I still feel myself drawn to stories that highlight the achievements of people with disabilities and chronic illnesses, whether these stories are of “overcoming” or simply being. For example, I was interested to find out that Shannon Boxx, one of the members of the US Women’s Soccer Team, has lupus and Sjogren’s disease. Her story—both her bravery at revealing her diagnosis, and her commitment to continuing her soccer training despite the disease— is inspiring to me, as a fellow lupus patient.
I know I speak for many of us diagnosed with disabling chronic illnesses when I say that diagnosis, treatment, and the day-to-day experience can feel like the slow dismantling of your hopes, dreams, and aspirations. Suddenly things that seemed easy (or that required little thought or effort) become nearly impossible. On a good day you may find yourself making choices between, say, exercising, doing chores, or seeing friends. On a bad day you have to decide if you have the energy to take a shower or even get out of bed. Often pride gets in the way of revealing how terrible you feel (I know I would be lost without my DermaBlend concealer!). On those hard-to-get-out-of-bed days, reading about someone like Shannon Boxx helps me to feel something other than hopeless resignation that I will never achieve the things that I have set out to achieve in my life.
So how do we make room for stories about illness and disability that offer hope to those of us with similar experiences without enforcing the expectation that we be happy, compliant, inspirational figures to alleviate the guilt of those who are not (yet) ill or disabled? Certainly the move away from terms like ‘handicap” and “cripple” and toward people-first language has helped. But there’s still a great deal of misunderstanding and animosity toward people with chronic illnesses and disabilities—no need to look any further than the politic discourse in the US surrounding access to healthcare.
I think part of the responsibility is for those of us who struggle with disabilities and/or chronic conditions to document our experience in an honest and straightforward way, and to educate others about the destructive power of negative stereotypes. Stereotypes about psychosomatic and psychiatric disorders and “hysterical” women continue to delay the diagnosis and treatment of autoimmune diseases in both men and women (it took seven years from the onset of her illness for Shannon Boxx to receive her diagnosis). Well-meaning friends, family, and even doctors suggest things like brisk walks, therapy, and prayer. This is unacceptable.
The average person encounters disappointment and unhappiness in his or her life, and no one expects that person to remain smiling, grateful, or “inspirational” even in the face of great hardship and suffering. Why should the experiences of people with disabilities and chronic illnesses be any different?
First and foremost, I started this blog as a form of therapy: a place where I could voice my hopes and fears, and work through some of my frustrations. Last winter, when I was so sick, I felt a sense of hopelessness creeping in, and I needed to do something about it. This blog was my way of taking back a little control, and re-narrating my life in a way that made sense. I began to piece together a new sense of self that had room for the woman I know as “Megan,” and the new identities and labels that were crowding her out: patient, chronically ill, lupus, RA, depressed, unhappy.
Somewhere along the way, I started “meeting” other people with chronic illnesses, through their blogs and twitter, and suddenly I had a readership (perhaps mostly fictional, but a few hardy souls kept reading) and a sense of connection. The load seemed somehow easier to bear. And some of the labels started to seem less and less a part of me, while the others felt more manageable. As I continue to blog, I find that it’s the chance to engage and connect that keeps me coming back, as well as the knowledge that there may be someone out there like me, feeling scared and alone, who will read my words and realize that she’s not the only one, that her pain and fear are real, but that there is life with chronic illness.
When I was younger, I made several blogging attempts and failed each time. I had the desire to write, but I didn’t know what to write about. And so my blogs languished in corners of the internet, mildly solipsistic and eventually abandoned. This little experiment–Objects in Mirror are Closer than They Appear—is now just over a year old. I won’t claim it doesn’t have its solipsistic moments, I am human after all, but I feel like I finally have something to say and the place to say it. Plenty of days I feel like I have more to say than I will ever be able to contain in these little snippets of my perceptions, thoughts, and feelings.
So thank you for reading, whomever you are, and know that I write for you, even if I don’t know you yet.
This post is part of the WEGO Health Activist Writer’s Month Challenge (HAWMC). During the month of April I will be writing a daily blog post related to health and health activism, often inspired by or in response to a prompt. For more information on HAWMC, visit the WEGO Health blog.
Back in my high school days I was a bit of a goth. I wore lots of vintage clothes—black and velvet, naturally—and I even had a black wool cape that I wore on chilly days in place of a jacket. If I had a superpower back then, it seemed to me to be a unique talent for antagonizing my fellow high school students. Yet despite my performative disdain for my classmates, I somehow managed to retain the nickname that had been following me for years: “Mighty Mouse.”
I’m not particularly mousey, rather it was my willingness to stand up against the school bullies that earned me the nickname. I couldn’t bear to see another child, especially someone who was smaller, or disadvantaged because of a physical or mental disability, picked on by a bully, and so I frequently stepped in to intervene. Or at the very least I tried to befriend the child who had become a target, and offer them friendship and compassion, if not protection.
If I have any “superpower” that has been honed as a result of dealing with chronic illness (apart from my supernatural ability to argue with insurance companies…), it has been this sense of compassion, and desire for justice and human dignity. Certainly I can be as misanthropic as the next person, especially when I see people behaving in negative or destructive ways. But like the quote I posted yesterday, being ill has taught me to accept that we all have our battles, and that just because pain is relative doesn’t mean that it’s any less disabling or terrible for someone else.
The first version of the prompt for the opening day of Health Writer’s Month Challenge asked me to imagine constructing a time capsule related to my health condition. The second version asked me to consider a time capsule that tells my story. So I’m going to do a little of both.
Health Time Capsule. Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?
Hmm. 2112. One hundred years is a long way off, and who knows what sort of technology will be available by then. I think the thing I want to capture in my time capsule is the excitement of the scientific discoveries that have been made in the past three decades, but also that there is still a great deal about illness that we do not understand, particularly autoimmune and rheumatological diseases. I would include articles about the development and release of the lupus drug Benlysta, as well as some materials to provide background on the issues of race, class, and access to treatment that Benlysta (and similar biological medications) raises in contemporary US culture.
Historians of medicine often puzzle over the way certain diseases were recognized (or not recognized) and treated (or not treated) in the past. I want to provide an archive to help explain how we early-twenty-first century people conceptualize rheumatoid arthritis and lupus, both in terms of the diagnosis and treatment of individual people, as well as how patients are treated as a group. I would include my own writing about my narrative of diagnosis, and my ongoing struggles during treatment, as well as images and stories of myself and others. I would primarily include printed materials (on acid-free archival paper, ‘natch) and I would also include video footage, though with the understanding that there might not be DVD players (or that the disc itself might be unreadable) in the future.
In the documents about my own experience, I also want to describe the complicated mass of phenomena that come together to form the medicalized body of a woman, including the history of hysteria, conversion disorder(s), and somaticisation as an issue of women’s physical and mental health; the absence of women from many clinical trials, particularly in the mid-20th century; and the political conflicts over such disparate issues as access to birth control, privatized health insurance, and medicare repayment (which affects access to rheumatological care). I want to provide a snapshot of what it means to be a woman, to be American, to be chronically ill, and to be disabled at this moment in history.
I want my time capsule to capture the struggles and the hopes of patients with rheumatoid disease and lupus. I hope that in 100 years these diseases will be cured—by advances in genetics and in the technology that has led to the development of biologic medications. If this is the case, I want my capsule to provide a window in to the experiences of individuals whose lives were ravaged by disease, and yet lived productive and even joyful lives despite their illnesses.